She had also started talking to us with a shrill, theatrical voice that made her sound like she was extremely sick and weak. I had habitually reminded her to “use her strong voice.” Her response every time was to immediately readjust her pitch and tone and sound like her regular self.

Looking back, it pains me to admit that “The Boy Who Cried Wolf” came to mind with a lot of my mother’s habits and complaints. I wasn’t sure how much was genuine and how much of it was wanting attention. 

A routine visit to her primary care physician the day after her late-night shout out about having breathing problems gave me the answer. She was taken to the emergency room because of very low oxygen levels. The doctors diagnosed her with interstitial lung disease, which may or may not have been pneumonitis from the clinical trial medicines. There was also some cancer detected in her lungs. She had been placed on supplemental oxygen. Because of her condition, she was removed from the clinical trial.

 The hospital visit was the first of several over the next nine months. She was placed in a short-term wing at a rehabilitation center, the same that they had placed her in a couple of years earlier that she was thrown out of for acting like a delinquent. She was told she would get physical therapy there to help her re-learn how to stand and walk, and then she would be able to go home.

Nurses at both the hospital and rehab mentioned that she called out for me all the time. Several staff had greeted me with “Are you the famous Ellen whose name we keep hearing?” When I visited, I sometimes heard her calling my name, but other times I just heard her crying out, “Help me!” When I asked her what she needed, she said, “Please help me!” or “Thank God you’re here!” When I pressed her to tell me how I could help her, she said, “I don’t know.” 

For several weeks, whenever I saw her, I found her in a state of panic. She looked up at me, whimpering and her eyes wide with fear. 

“Oh, Ellen,” she said, “You have no idea.”

“What, ma?”

“You have no idea what I’m going through here,” she said through labored breathing and sobs. 

She described a male, black nurse as being the “head honcho” whose orders all the nurses followed. She described everyone as being “in on it” together. She said he had her on an examining table and while he didn’t physically touch her, he told her she was “his.” Her hysteria had become so relentless that we requested that the rehab find a replacement for Vito Corleone so we could remove at least one source of dread. 

This worked.

For a while.

Then the hysterics started again. This could have been due to just about anything. She had been diagnosed with a UTI, but psychosis from the steroids she was given for her lung inflammation, or anxiety from steroid withdrawal, may have been the culprits. My personal theory was that she had been taking the antipsychotic drug, olanzapine, for nausea and vomiting for many months and then it was abruptly discontinued when she was hospitalized. Anxiety, confusion, crying spells, depression, hallucinations, psychosis, restlessness and mood swings were on the list of olanzapine withdrawal symptoms.

When her lucidity returned, she expressed how much she wanted to go home. I told her that the only way for us to make that happen was physical therapy and getting her to stand and walk again. The physical therapy nurse told me that my mother wasn’t being cooperative and seemed to be in too much discomfort for her to feel physical therapy was appropriate. I, myself, tried to play hero and help my mother to stand up from a sitting position on her bed. Despite my mother trying very hard, it just wasn’t happening. It became apparent that she would not be coming home.

We tried to find ways to make her happy. Nothing pleased us more than hearing her enthusiastically exclaim “Ooh!” when offered something as simple as a hamburger from a fast-food chain restaurant, or “Oh, does that sound good,” when offered Chinese food or even just a Devil Dog. 

My mother loved life, even when she was hating it. She thoroughly appreciated life’s simple comforts and the fact that they helped her get through it. She had talked with me about how certain guilty pleasures preserved her sanity through tough times with her in-laws and other storms. This led to an accumulation of enough dresses, jewelry and handbags to fill ten department store warehouses.

 I had wanted more than anything to keep her life as it always was, endearingly mundane with all her comforts to keep her going. But what I wanted and what fate had in store for her were two different things, and over time her interest in the things that once brought her joy waned. Material possessions had lost meaning to her, and with her failing eyesight and memory, it was all she could do to just get from one day to the next. 

There was another emergency room visit. This time, she was in a coma-like state because the rehab had placed her on hard-hitting opioids that were coupled with her newest, sleep-inducing cancer medicine. I was so grateful to see her awakened and alert after she was essentially detoxed, however short-lived this was before she resumed the cancer medicine combined with milder opioids. I had about a fifty percent chance over the next couple of months of finding my mother in such a deep sleep that I couldn’t awaken her. I remember the nurses also trying to wake her, by lightly tapping her cheeks and saying repeatedly, “Shelia! Come on, Sheila! Wake up!”

During those times when she was awake and able to carry on a conversation, I made sure I had the chance to tell her how much I loved her, that I loved her more than life itself, and how she was my favorite person in the whole world. I had a feeling that time was of the essence to express this. 

(stay tuned for part 9 of “Foxtrot: My Mother’s Last Dance”)